Benjamin was just 27 hours old when we lost him. Perhaps the strangest part of our story is that we knew he was going to die before he was even born. Benjamin was diagnosed with Patau Syndrome when I was 22 weeks pregnant - a syndrome simply not compatible with life. My hope is that my blog may bring comfort to someone who has lost a child or help someone who might be faced with a difficult decision like we were. Here is the story of my beautiful little man...

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Wednesday, 26 January 2011

18 Months On

It's 18 months since my beautiful baby passed away. A lot has happened during that time but one thing remains constant. My love for my little boy never diminishes or fades. Not a day goes by when I don't think about him and miss him. Benjamin will always be my little Peter Pan - my baby boy who will never grow up.

Some people may question why we made a conscious decision to put ourselves through this pain but to those people, I would say that I believe the pain of choosing a different path would possibly have been greater. If I had chosen to have a termination, I would have had to live with that decision every day of my life. Asking myself, what if? Wondering if things might have been different if I'd given my baby a chance, perhaps never wanting to talk about it and not having the memories of Benjamin that I have. Dealing with the fact that I'd taken a pill to stop my baby's heart from beating and yet still having to deliver my baby- for me, that's the reality. Instead, I gave my baby a name and an identity, a chance to meet his family and a legacy that I hope will remain with him for years to come.

I very much belive that Benjamin hasn't gone, he's in a better and more beautiful place and I know that one day, I will see him again. I believe that he had a purpose in this life. I wasn't sure what it was at first but in the 18 months that have passed, I can see that so much good has come out of Benjamin's short life. I believe that he has touched so many people and has been the inspiration for me to do some fundraising which I know has benefited other families in similar situations to me. Friendships have been forged that would never have happened had it not been for Benjamin.

The pain of losing a child isn't something that I would wish on my worst enemy. No parent should have to go through it. However, I know that put in the same situation again, I wouldn't do anything differently. I wouldn't choose it but I wouldn't change it either. I know that for us, we absolutely made the right decision. I have no regrets and in fact, I feel so blessed, honoured and proud to be the Mummy of this beautiful and special little boy.

14 months after we lost Benjamin, I gave birth to my third child, a beautiful baby boy, Matthew. I know that some people thought it was too soon but nobody knew how Lee and I felt and how we had dealt and were still dealing with things. In no way did we have Matthew to replace Benjamin, that's just not how it is. I knew that we were ready and it is not for anybody to ever judge when is the right time for a couple to have another baby after losing one. I'd be lying if I said that the pregnancy wasn't a worrying one, because it was. I worried from conception until the moment I held Matthew in my arms and could see for myself that he was perfect. We didn't tell anyone, not even our parents that I was pregnant until I had received the all clear at my 20 week scan (not really sure how I managed to hide it - or maybe people were just too polite!!). I know that people mean well and only have your best interests at heart but I couldn't face the barrage of questions - when's your scan, is everything ok? We just needed to deal with it in our own way.

We've never found out the sex of any of our children before they were born because it has never mattered to us. It was even more so with Matthew. It really didn't matter whether he was a boy or girl. The baby's health was the most important thing. I did wonder how I would feel if I had another boy. Would I look at him and wish he was Benjamin, would I try to imagine in my own mind that it was so as to help ease the pain? I was a bit unsure of how I was going to feel but I've always believed that Spirits are individual. I was prepared for a boy when Matthew arrived though, it was no surprise, I knew he was a boy from quite early on. Call it a maternal instinct if you like, I just knew. The moment I held Matthew in my arms, I felt that overwhelming love and I knew without any doubt that Matthew has his own little spirit, he isn't Benjamin and I wouldn't want him to be, Benjamin has his own beautiful spirit.

Losing Benjamin has made me really appreciate how fragile life is and how we need to make the most of every moment we have. Family is the most important thing in my life and spending time together as a family is so important to me. I think that losing a child makes you appreciate that even more. And as any new Mum will no doubt agree, having a newborn at home can be exhausting and draining but since losing Benjamin, when Matthew cries in the night and keeps me awake for hours on end or when he's screaming because he doesn't like getting in his car seat, I stop myself from complaining and always think about the little boy that I lost. I would have given absolutely anything to be woken up by Benjamin in the middle of the night, no matter how many times or for how many hours, I'd have given anything.

As time passes, it helps to ease the pain but it never goes away. I relish every opportunity I have to talk about my beautiful baby and can do it without tears most of the time now. Sometimes, the tears come when you least expect them but I think that's healthy. And when anyone asks me how many children I have, the answer is always 3.

The Funeral Director that did Benjamin's funeral had lost a child himself and something he said to me always sticks in my mind. He said "You never get over it, you just learn to live with it". So true. My only hope is that by going through something like this, I can help to make a difference to others who so sadly find themselves in similar situations.

We are so proud of you Benjamin. We love you and miss you and you are forever in our hearts,

18 comments:

Love you Nicola! I'm looking forward to reading all of your blog, even though I know I will shed many tears! I hope you know I think of you often, love you tons and can't wait to make it back to England so I can give you a giant hug! You are and always have been an amazing woman!

I've just read your blog after going in from Katie's Facebook post. I worked with Katie years ago so I don't know you at all but reading your words is one of the most personal things I've ever done. This is a beautiful tribute not only to a beautiful baby called Benjamin but to an amazing family. I cried for you, your loss and for your strength in keeping life positive. God Bless you and your family xx

Just want to say thank you to each of you for your lovely comments. It took me a while to pluck up the courage to share Benjamin's story as it's so personal but I'm so happy I did. I have been so touched and overwhelmed by the response. I know my little Angel has touched the hearts of many and it reaffirms to me that his very short time here with us had a very big purpose. Even if reading it just makes us appreciate what we have in our own families that little bit more, then it has been a success. Thanks again, much love Nicola xxxx

What a beautiful story. It must have taken a lot for you and your family to go through all of that but nobody will ever know how you felt when you had your first and last cuddle with your baby. Its an unimaginable feeling and like you said in your blog, you wouldn't wish it upon anybody. What an inspiration you are. xxxx

Anon: Benjamin was not in pain, the doctors comfirmed that. His parents did everything they could for him, not for themselves. They gave him every chance & I cannot see how that could be anything but selfless.

Anon: Nicola did what she believed was right for benjiman , who are you to criticise? Any decent mother wouldn't subject their child to any kind of pain unnecessarily, he wasn't even in pain!! Benjiman was given a chance but was unfortinantly taken from his family.

Dear nicola, What an amazingly brave lady you are. You decided to give your baby a chance in life and it was his decision whether he would live or die. I wish I was as brave as you to have taken the chance when I found out my baby had turner syndrome amongst other things. I too wished that she had downs as then she would have had a chance in life. Nobody should ever judge anyone in situations like this. Until it is is happening to them, which I hope never does

Brave, amazing woman. My thoughts go to you and your family. Don't listen to 'one' negative post on here, as you read the majority is positive. Thank you for sharing. I am in tears as my 9 week old sleeps soundly beside me. I will live each day making the most of my family as you do. There is so much in life we fuss about but in the end it our nearest and dearest who matter. x

What a true inspiration you are, what a lovely tribute to you darling son.... Love the way you described him as Peter Pan " the boy who will never grow up" Im a student midwife and as cruel as it is I will have to support women who have been through this awful experience.........He will be so proud of his mummy and his family.

I will use this phrase as its a true inspiration and emotion to help women come to term with the tragedy of loosing something so precious.

Thank you for sharing the journey of your beautiful son. I am sorry that Benjamin was not with you for long but like most parents I know, you would not have given up a minute of your time and have no regrets.

It is important to note that some children with these conditions do survive for many years. There is a very wide spectrum and it is difficult to detect, beyond the existence of a severe brain or heart anomaly, which children will survive. Little is known as little research has been done. Decades ago, someone slapped the label of "incompatible with life" on this condition and somehow, it stuck.

In 2003, physicians who are leaders in pediatric ethics co-authored the paper, "Lethal Language, Lethal Decisions" in which they summarized, "Although many of the congenital syndromes that used to be lethal no longer are, they are still routinely referred to as “lethal anomalies.” But the label is not only inaccurate, it is also dangerous: by portraying as a medical determination what is in fact a judgment about the child’s quality of life, it wrests from the parents a decision that only the parents can make."

What is known about surviving children and reported almost unanimously by the families is that the children are happy and enrich the lives of all who love them.

To Anon: your suggestion that the baby would suffer less by termination of life in the womb by a shot of KCL to the heart is utterly ridiculous and insensitive. Perhaps you are dealing with guilt about decisions you made and my heart goes out to you if that is the case.

To Anon- Midwife student: Your message is kind and well intentioned but it would not be correct to call this an "awful" experience. It is a very difficult experience, that is for sure, but foremost, it is a loving, enriching, bitter-sweet and life-altering experience. Every woman should be given the option to have her baby and to receive all the support she needs along the way.

I agree completely with the previous post. Very clearly explained. Nicola, you are an inspiration. You carried him to term giving him a chance of survival. You gave him the opportunity to feel love. I read this blog through tears. Life is so unfair. Benjamin didn't die in vain, he is helping his amazing mummy spread awareness to the world. Much love to you and your family. X

I've just found this blog following a link from Babyworld and am sat, speechless, at such a beautiful tribute to a much-loved and beautiful baby.

Nicola, you and your husband are truly astonishing - your generosity of spirit, your selflessness in continuing with the pregnancy and your determination to give Benjamin the very best possible chance has moved me immeasurably.

Myself and my partner have just read your story. What amazing people you are! I think this sort of life event brings out the very best in people. Sadly we have to say our final farewell to our beautiful son George tomorrow who was Stillborn two weeks ago. Although our circumstances were different we can relate to a lot of your experiences and feelings. This has brought us some comfort and given us hope for the future. Thank you for sharing your story. xxx